Menses and Sexual Changes – A Taboo or Overlooked Topic After TBI and Trauma

So hello there soul searchers. There has been a lot going on with my body and my life over the last 3 years. I have gone from calling it “my wreck” to “the wreck”. For the longest time it called it “my wreck” because it was something that had happened to ME. However, in my effort to step outside of myself and towards recovery away from a “patient” status and more of an “advocate” and “self-advocate” status – I want to try and keep myself somewhat separated from it as I do not own it as my own, but rather something I experienced.

Anywhooooo, that being said, I have definitely been forced out of my comfort zone the last 3+ years with my body. I have learned to get naked, show owies, show scars, and talk about taboo topics with specialists, providers, and support teams to the point that I can pretty much talk about any topic regarding my body without it being a “hush” topic. In fact, in this whole time since my wreck noone asked me about my menses, aside from my previous PCP Dr. Mathias (a staunch adovocate for me) who I think at this point I have Martyrized since she moved out of State….or ….I should add, noone that I remember anyway. I gotta allow room there for that possibility. I can say though, that if anyone asked, they never did anything about following up on it.

The body is a marvelous piece of art and machinery. For a woman, when she experiences a great bodily trauma, especially involving a Traumatic Brain Injury (which is a different recovery process for a guy by the way – sorry guys) – there is a whole host of things that come into play that most doctors and specialists do not even address, though it is absolutely critical to do so.

Did you know? Now here is where it gets super personal so you may not want to read past this point…….

My menses was mostly irregularly-regular before the wreck. I was due to start my menses between January 7-10, 2014. I was in the wreck on January 4, 2014. Now you may be thinking wow thanks for sharing information I didn’t need to know. Why does this matter to me as a reader? Good question!!!

Did you know that I did not get my menses between the 7-10 of January? In fact I didn’t get any menses at all until mid July 2014 which was not a full cycle of days for me. Then I skipped some months then a couple of months I had my menses THREE times….(yeah that was a pain to deal with as I had someone doing all my pericare at that point still) in ONE month. Then a month with only a two day cycle and missed more months and this continued for about 2 years or so. It wasn’t until late 2016 I started to get back to a somewhat predictable cycle.

Did you know what during this whole time in 2014 and part of 2015 I was losing handfulls of hair, like literal handfulls and my hair started thinning out. I had no apetite, no liido and lost just about 55lbs in a 10 month span of time. My medical record documents me bringing all these issues to my providers. Like literally all of them. Noone knew what to say except sometimes the body “just does that”.

Well, except Dr. Mathias, PCP who said she felt I most likely had hypopituitarism and hypogonadism and that my pituitary and hypothalmus had been damaged by the Traumatic Brain Injury. She suggested I make contact with a Neuroendocrinologist. Lo and behold, no Neuroendocrinologist in the whole State of Michigan….go figure.

My weight held and I even lost a little more until the Spring of 2015 when suddenly over about a 3-4 month span of time I gained nearly 50lbs back and then another 10 then 18lbs subsequently. I then started growing hair in places that hair shouldn’t grow on a female and I was mortified. What was happening with my body. I still had little appetite and I don’t remember the last time up until that point that food sounded interesting at all.

My thyroid labs and other labs were all over the place, yet noone thought to check these the whole time I was hospitalized (nearly 4.5 months). Even though my medical records showed a preexisting Hypothryoidism, noone ever did a thryroid panel on me – isn’t that bizarre?

I have been battling many neuroendocrine changes as a direct result of my Traumatic Brain Injury and bodily trauma from the wreck and nobody did due diligence to catch this. Yet all my symptoms were documented in my records. Documented but not followed through on. Again, bizarre!

Recently in an online support group someone brought up that they hadn’t had their menses for months since their TBI and wanted to know if anyone had experienced such a phenomenon. Suddenly the comments came flying in. I was astounded. Then I started to research.

How different would my rehabilitation plan have been, if I was tested properly, with some pretty basic and inexpensive blood work while hospitalized? I can tell you that I have been chronically anemic since then. My labs are still all over the place with a lot of things. When I brought this up to a recent provider, they said they didn’t think my menses stopping had anything to do with the wreck and they couldn’t explain the hair loss and other symptoms – that it was just “coincidence”. Wow – really? Turns out they couldn’t have been more wrong.

Here is a link to the compilation of the research I did regarding this very topic:

As it turns out, there are a lot more studies out there than I could even begin to fathom. So why was something so well studied still not a matter of automatic testing in a level 1 trauma center of all places…or beyond?

As it turns out, me being within 2 weeks of starting my menses (within 3-6 days of it actually) is absolutely clinically significant regarding my rehabilitation overall. See link to see why…….

Amazing stuff…..the search continues!

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